Alzheimer’s/Dementia Caregiving & Connection: You Are Not Alone on This Journey

Consider this scenario: Your partner of 40 years was diagnosed with dementia 5 years ago. You have been caring for her alone all of this time. You feel isolated, stressed and do not know where to find help. You are similar in age to your partner, and you have your own health issues to deal with as well. Being Internet savvy, you decide to surf the net when you have a spare minute, and find a link from Alzheimer’s Association about an LGBT dementia caregiver support group. You tear up, relieved and scared, and decide to attend the next group. This connection with others facing similar challenges begins a new chapter of your caregiving journey.

Such a story is among many that demonstrate how connection can be one of the most valued aspects of attending a support group. For nearly 3 years, I have had the honor of facilitating a support group specifically for LGBT caregivers of persons with dementia. This group is co-sponsored by Alzheimer’s Association, Openhouse, and Institute on Aging. The group provides LGBT caregivers with the opportunity to gain knowledge about dementia, improve access to healthcare, discuss financial concerns, legal concerns, long-term care, end-of-life care, dual caregiving roles and learning and finding ways to take care of themselves as a care partner, as well as connecting to community resources and getting help.

Tears of relief are often a theme in our support group. It is very common for LGBT older adults to be alone in caring for their loved ones. They may have initially reached out for assistance, but were unsuccessful in finding LGBT affirming services for their specific needs. They may have been fearful about being separated from their partner or for mistreatment because they are LGBT. Many participants
of the support group feel a sense of isolation and fear lingering from the earlier years of the AIDS epidemic.

According to the Alzheimer’s Association, dementia is a general term for a decline in mental ability, severe enough to interfere with daily life. Memory loss is an example. Alzheimer’s disease (AD) is the most common type of dementia. When the first wave of baby boomers reaches age 85 (in 2031), it is projected that more than 3 million people age 85 and older are likely to have AD. It has been estimated, by 2020, that the total population of older adults in San Francisco living with AD will be 26,774. Using the city’s 12 percent estimate of the LGBT senior population, it can be projected that, by 2020, approximately 3,213 LGBT seniors will be living with AD. This estimate is specifically related to AD, which accounts for 50 to 80 percent of dementia cases.

Many LGBT people have experienced difficult and alienating relationships with family, friends, employers and service providers. Some have felt the need to move away from their families of origin, to stay in the closet, or to distance themselves from discriminating and prejudiced situations. When compared to their heterosexual counterparts, LGBT older adults are twice as likely to age as a single person, twice as likely to live alone, and three to four times less likely to have children to support them. For LGBT elders of color and transgender elders, they have more barriers to accessing healthcare and community resources.

LGBT people are more likely than heterosexuals to simultaneously care for a partner, friend or person from their family of origin and need support in finding ways to balance dual caregiving roles. It can be a challenge to attend to one’s own physical, emotional, social and spiritual well being while providing care to one or multiple individuals.

Navigating community resources can be challenging, yet LGBT affirming services for caregivers of persons with dementia are increasing and becoming more accessible. For example, the support group I facilitate has been successful in providing an in-person group for LGBT dementia caregivers in the Bay Area. Alzheimer’s Association and Openhouse are co-sponsoring Basics of Alzheimer’s and Dementia for LGBT Care Partners, a webinar for our community. It has been scheduled for Thursday, March 20, 2014 from 2-3 PM. To register online, go to: webinar.kintera.org/LGBT2 or contact Alzheimer’s Association. They have also set up an online community to provide open discussion for caregivers about their questions, concerns, needs and just to vent with each other and service providers.

Caregiving may be isolating, but you are not alone. There is help and hope in the community to enable you to connect with others who are on a similar journey.

*Dr. Marcy Adelman has presented recommendations on LGBT Alzheimer’s/dementia care to the San Francisco LGBT Aging Policy Task Force. Task force recommendations will be presented to the Board of Supervisors this spring. Look for future announcements about the LGBT Aging Policy Task Force recommendations and presentations in the Aging in Community column.

Erica J. Erney, a licensed clinical social worker, works as a geriatric case manager at the Memory Clinic for Kaiser Permanente, Santa Clara Medical Center. She is a Diversity and Inclusion Committee Member at Alzheimer’s Association, Northern California & Northern Nevada Chapter. Erica volunteers in her role as facilitator for the co-sponsored LGBT dementia caregiver support group. E-mail: Erica.Erney@kp.org